Introduction

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On January 22, 2012, the Treatment Action Group marked its twentieth anniversary. Over the past two decades, we have helped to accelerate a historically unprecedented therapeutic revolution: the introduction of highly active antiretroviral therapy (HAART) in 199596, followed by its rollout to nearly seven million people worldwide. TAGline will publish a series of articles this year to examine the role of AIDS activism -- and its evolving strategies -- in these accomplishments, and how these experiences can help us build the long road towards the cure still ahead.

ACT UP's Legacy

TAG was formed by a group of activists from the AIDS Coalition to Unleash Power (ACT UP)/New York's Treatment and Data Committee (T+D), which had spearheaded ACT UP's work on accelerating HIV drug approval by the U.S. Food and Drug Administration (FDA), increasing community engagement in clinical trials conducted by the National Institutes of Health (NIH), fighting industry to bring down high drug prices, and demanding innovative expanded-access programs for people with AIDS unable to enter clinical trials of lifesaving experimental drugs.

ACT UP had won significant concessions from the FDA, leading to parallel track in 1989 and accelerated approval in early 1992, and from the NIH, leading to the formation of the Community Constituency Group (CCG) in 1990 and to activists and persons with AIDS being represented on all research committees of the AIDS Clinical Trials Group (ACTG) and other NIH AIDS research networks. By 1992, two drugs were approved to treat HIV and a handful more were approved to treat or prevent the most common opportunistic infections.

Despite these early victories, effective combination therapy was still years away. The death toll kept rising, seemingly impervious to the interventions of ACT UP and other activists, as well as those of the research establishment. There was no national strategy to deal with AIDS, and no national research plan. For twelve long years, the Reagan and first Bush administrations had turned a deaf ear to the enormity of the AIDS crisis. Congress (then led by Democrats in both houses) had taken halting legislative action at several points, funneling money to the NIH for AIDS research, as well as creating a weak coordinating entity at the NIH to help its many institutes. In 1990, Congress had passed the Ryan White CARE Act, which created a funding mechanism to pay for expensive AIDS treatments, though there were as yet insufficient drugs to make a dent in the epidemic's deadly swath.

Within ACT UP, disagreements about strategy, tactics, and targets were inflamed by the desperation all around us. With the promise of new drug classes in the pipeline and proof-of-concept combination treatment still in clinical trials, TAG's founders believed that the solutions and ultimately the end of the HIV pandemic would come from more -- not less -- community engagement with research to accelerate the development of better treatments, a cure, and a vaccine. It would require a dedicated cadre of treatment activists working full-time with organizational support. It was clear that we were in it for the long haul.

Spurred by the changing environment and the upcoming presidential and congressional elections in 1992, TAG decided to try out a think-tank approach to changing the nation's response to AIDS. Frustrated by three years of activist experience inside the ACTG -- which spent only one-eighth of the $800 million Congress was appropriating for AIDS research by 1992 -- TAG pursued two initial strategies to address the apparently unstoppable pandemic. The first was to rectify institutional failures at the NIH by examining its research investment in detail and proposing more effective ways to ensure progress. The second was to advocate for moving beyond drug development and clinical trials to the basic science, where the still critically unanswered questions of how HIV destroyed the immune system could, if unlocked, pave the way to better therapies, and -- it was hoped -- eventually a cure and a vaccine.

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